What excites me

Every so often, we get a glimpse of what may be on the horizon. The things that researchers are working on, that might — someday — have the potential to possibly improve the lives of people with diabetes.

I used to get excited over every little bit of news. Everything new. But then something changed. Perhaps I’ve become cynical. Or fearful. Or pessimistic.

Some of these new developments just don’t excite me anymore. Yet others do.

For instance:

The Artificial/Bionic/Bi-Hormonal Pancreas. In all its iterations…

…does not excite me. To a body where infusion sets continue to kink and where adhesives continue to leave irritating red marks, where steel continues to puncture and where door handles continue to pull, where swimsuits fail to accommodate and nudity fails to arouse, I just have a hard time accepting that the “next big thing” will still have to be glued to my flesh.

True, I can disconnect from it all now. I don’t have to have all this stuff stuck to, and hanging off of, me. The guy my wife married almost ten years ago had none of it. And though the benefits outweigh the drawbacks to me, sometimes the last ten years of “progress” seem to have served to complicate rather than simplify, and as Christel alluded to on Monday, none of these things can be fixed while we’re still taping sensitive appurtenances to our bodies.

“Smart” Insulin…

…excites me! (Unfamiliar with it? See this article and video on A Sweet Life). When I first heard about this, I thought it was a pie-in-the-sky idea that could never become reality. How could someone program an insulin molecule to respond to an IF…THEN statement? But then, at a JDRF event I attended last year, it was explained to me in a different light. Glucose-Responsive Insulin (a name which, though not as catchy, is quite accurate) consists of insulin molecules coated by some sort of enzyme. (For the ultimate in ironic metaphors, think of the insulin as the chocolatey center and the enzyme as the colorful candy shell with a lowercase “m” on it). When the enzyme comes in contact with glucose, it dissolves, thus releasing the insulin. Put in this context, it seems doable.

But think about what it would mean: this would be a revolutionary invention, completely changing everything we know about diabetes treatments today. You take an injection, the amount does not need to be precise, and over time, it makes its way from the subcutaneous tissue to the bloodstream, just like today’s insulin. But when blood glucose rises, the insulin is freed from its shell and counters that rise. Even better, since it’s already in the bloodstream, it is effective immediately! No more waiting for it to work. And in time, the body heat desensitizes the insulin (as heat is known to do today), so you don’t end up with too much un-activated insulin floating around the bloodstream.

Think about it: No more carb-counting. No more pre-bolusing. No more pumps and tubing and expensive recurring supplies. No more hypoglycemia. No more precision. Just a simple injection – maybe once a day or a couple of times a week. Perhaps some occasional blood sugar checks, just to be sure it’s working. It would make a lot of PWDs very happy. And a lot of diabetes-focused businesses very unhappy.

Last I heard, Merck bought this technology from a small research group and is working to make it a reality. If they are successful, they would dominate the world-market in Type 1 diabetes therapy. Why would anyone choose anything else?

Colors…

…don’t excite me. Yes, my insulin pump can come in black, white, blue, purple, or pink – and I can dress it up in things to change its color. I can even get my infusion sets in blue or pink if I like. To me, that’s just putting lipstick on a pig. Though it may add style or personality, it’s not making my life any easier. (Though, in honesty, since switching from a black to a white pump, there’s been a noticeable decrease in Pager Error incidents). In fact, choosing a color for a device seems like a chore to me; another decision of which the repercussions are not worth the effort I put into it.

Also within the spectrum of colors are the displays on modern meters and CGMs can tell me, via color, when my blood sugar is too high. Seeing the number 350 makes me feel bad enough, but seeing it in bright red or orange just adds more fire – more implied scolding – behind the number. It’s the numeric equivalent of TYPING IN ALL CAPS. And just like my response to all caps, there are documented cases of me yelling back at my meter to “STOP YELLING AT ME!”.

Bottom line: I can do without the colors.

Found real-estate…

…excites me. Both on my body and in my pockets. Because when warmer weather comes along, clothing becomes lighter, and jackets find their way to the back of the closet, I struggle to find a place to put my meter, my pump, and all my other diabetes crap. Combining devices into one is a big help. Not to mention the stuff that sticks to my body — which I try to keep below the swimsuit waistband as much as possible.

BCG (and biological cures in general)…

…no longer excites me. At one time it did. This was a novel approach at a cure that seemed to hold some promise. Dr. Faustman learned all about “bad T-cells” and the other biological terms that I’ve read and since forgotten. She’s also found that a substantial number of veteran Type 1’s still produce a tiny amount of insulin, giving me hope that the beta cells aren’t actually gone, they’re just being killed off as quickly as they can be created. Her research gave me renewed optimism towards finally eradicating Type 1.

But then people started questioning her methods and her findings, and some of her trials didn’t quite yield the Holy Grail that we had hoped for. Though this didn’t entirely discourage me, some recent news about the start of a Phase II trial did.

While the start of a trial is a good thing, the dates given weren’t so encouraging. From Joshua Levy’s blog (linked in the previous paragraph):

The current plan is to complete data collection in 2019, and finish the study in 2022. That means it is reasonable to expect publication in the 2022-2023 time frame. I specifically asked if they were going to publish interim results (for example: after one or two years), and the answer was no.

This tells me that this particular line of research, already in the works for awhile, won’t yield any more information until I’m somewhere around my 50th birthday. It also tells me that the “5 or 10 year” line that we’ve all heard so often simply cannot happen. Even if everything goes perfectly by 2023, there will still be a Phase III trial, then FDA approval, then healthcare-reimbursement negotiating and coding schemes. By the time all of that happens, I’ll probably be dead. And if we’re talking about encapsulating islet cells or any of the other efforts, the timeline will likely be the same.

OK, I’ve not entirely lost faith on the cure front, but I’m highly discouraged.

FDA approvals…

…excite me. ANY kind of FDA approval. It could be for a new kind of insulin, cold medication, remedy for baldness, or medical marijuana. As long as the FDA is pumping out approvals, there’s momentum. Compared with our friends in the Eastern Hemisphere, momentum to bring things to market is something we’re severely lacking here in the States.

Encapsulated islets…

…I’m on the fence with this one. Whether the islets are stored in a Mini-Organ or a teabag (I’ve heard of both), it’s still someone else’s islets, and there’s still some sort of immune response to deal with. Immunosuppressants make me uncomfortable . Not to mention the whole donor-recipient matching process and the FDA approval process. BUT, the FDA isn’t really a big obstacle to me — if I need to take a trip to Switzerland or St. Petersburg to get my “guaranteed” end to diabetes, I’ll find a way to do it. The FDA has no jurisdiction in those parts. But will it work, without serious side-effects? I’m not convinced.

Things like this (especially caught on video!)…

…excite me. For no justifiable reason whatsoever.

Patient-industry Interactions…

…excite me. There has been some criticism of certain advocates being “in bed” with certain companies in industry. Industry give free products, trials, trips, or whatever, in exchange for publicity. (Although we all try to be candid and honest, it’s difficult — REALLY DIFFICULT –to write something scathing and harsh towards someone you know personally and who has done something for you). But if letting people try a product free of charge will open the window for true, constructive feedback, then that’s a good thing. Because I think I have lots of good ideas, and I’ll bet you do too. Finding someone to listen to them isn’t easy, though, and building relationships with industry – even if they have foundations in marketing – is a way to start the conversation. It’s a dialog that patients and industry have been lacking for far too long, and seeing these relationships get built and knowing that people like us can actually influence change is phenomenal.

I’m excited that you took the time to read and write all of this great info. Thanks! I feel informed. And I like the colors on my Dexcom graph – – –
How many videos did you have to attempt to get the 100?

Just one, and I wasn’t really trying for it. Last August, for the entire month I video recorded every needle-poke (infusion site, CGM sensor) and fingerstick (two) that ended up going in a sharps container. I was planning to put it together in a sort of video montage, but then I realized (1) how much work it was, and (2) how such a video could get abused if put on the Internet, so I abandoned the idea. This was one of those recordings.

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Although I may appear convincing, I'm not qualified to dispense medical advice. Neither are others who may contribute to this blog. So read, learn, discuss, and enjoy, but remember that any decisions you make regarding your health or treatment of diabetes are yours and yours alone. If you have questions, ask your doctor.

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